This blog is to chronicle my family's experiences with the autism spectrum -- it is NOT indicative of any medical or diagnostic truths. There is so much information out there, much of which is presented as facts, when, in truth, they are unproven and contain unsubstantiated pieces of information. I just want everyone to know that this blog is ANECDOTAL and based on ONE FAMILY'S EXPERIENCE; it does not exist to present scientific facts (unless I specify otherwise).

Sunday, December 27, 2009

Well, it's currently the last week of December, 2009 and, it's time for me to think about the last year and plan for the next one. 2009 has definitely been a bit of a roller coaster -- in many ways a year not to be forgotten. It's when we were first introduced to autism. It was also when we took our twins to Disney World for the first time, and when Daniel discovered the wonders of summer camps. It started with a bang (both of the twins, Kevin and extended family all had a bad case of stomach flu [on New Years Day]), and will shortly end with a visit with family.

For me, 2009 has been all about "education". In January we initially contacted MCITP. By mid-February, we had begun the process of dealing with receiving services for Rachel and Simon -- although we didn't initially know that their problems were "autism" (we thought they were just "speech delayed"). My mid-March, we were specifically told that both of them were on the spectrum by a developmental pediatrician (just before leaving for our Disney World vacation). This was then confirmed by MCITP evaluations shortly after we returned. 1-2 weeks later, we were starting speech/OT in the home, and my research had begun. We've tried classroom settings and in-home ABA therapy. Diagnoses have been made and confirmed. We've been to a major research center in Baltimore (KKI) for evaluations and will continue to see the professionals there over the years. We've entered the IEP world and are preparing our nearly 3-year old twins for entry to special education preschools. And I've come to understand the importance of meeting their individual needs, even if it means separating them into different programs.

I never thought I would be in this situation, but now that I am, the education that I've received (and am continuing to develop) is definitely worth while (I just wish it didn't come as a consequence of having 2 children on the spectrum). I feel that so many people (parents, professionals, and others) are misinformed because of the lack of quality information available, and therefore the strangest treatments and theories are being brought forth, some of which can be quite harmful. As a parent of autistic children, I can only hope that I will never feel the level of desperation that has me put my children at any unnecessary risk in the hope of "finding a cure" or "reducing the damage".

Our journey is far from over, but it's a definite beginning. 2010 will bring us new schools (which will require me to put both of my 3-year-olds on a bus to go to school), a fight to keep a private program supported by the public schools, more evaluations (and possible enrollment in non-invasive studies), as well as other things that sitting right here right now I just can't anticipate. Additionally, other areas of our lives will continue to develop -- Daniel will be 5 in April and will begin kindergarten in September and Kevin and I will continue to celebrate our 12th (and nearly half of our 13th) year of marriage. And who knows what else will come? And through it all, will be my continuing education about autism and everything that comes with it.

So, much of 2009 has been about autism for me. But my life is good, my family is happy, and, when you think about it, what else really matters.

Goodbye 2009, Hello 2010! May everyone reading this have a Very Happy, Healthy and Prosperous Year!!!!!

Thursday, December 17, 2009

.....well, I've finally (mostly) adjusted to the thought of separating the twins in a month or so. Even their sleeping is starting to get a little better (still adorable with them falling asleep together, and it's still taking forever, but once they're asleep, they've been STAYING asleep) -- me sleeping, well, that's another story that MAYBE I'll write a post about another time.

Then yesterday happened.

First of all, let me just say that I've been having a less-than-stellar week -- wouldn't go as far to say it's been a bad week, but it's been a bit stressful trying to get everything in taken care of in a limited amount of time -- I've been feeling like I'm running 5-10 minutes behind with everything I've been doing. We spent "parent group" on Wednesday morning talking about stress (guess it was felt with the holidays approaching it was a good time to bring up the subject of "stress") which I thought was quite funny since I had been racing all morning and my stress level was probably a bit on the high side. After taking care of the normal early-afternoon Wednesday activities, I finally had a chance to get onto the computer for a few minutes and check email and Facebook and maybe play some stupid online games for a little while. In my inbox was a message -- and the subject header was "MPAC may be closing. We need your help now."

This is the program that Simon has been placed in. Neither of the other programs available really address his needs, which is why I knew when Rachel was placed in CAPP that they were going to be separated. I'm still trying to gather information about what is actually going on, but every time I get an update, the news seems to be getting worse for the future of the program. It's not likely to affect Simon immediately, but the longer his placement is intended in this kind of program, the more likely it is that it will directly affect us. Currently, the program is "rallying the parents" to try to get them involved by notifying the county Board of Education to continue referring kids to the program. I would love to be involved, but since Simon hasn't started yet, I really don't feel like there is anything I can contribute (the Board of Ed meetings are January 13 and 20 and Simon will be starting on January 12).

If MPAC goes away, I'm really not sure what's going to happen for Simon. If it comes down to that, by the time it happens, hopefully his needs will have changed enough that the other programs offered will be sufficient, but based on where he is TODAY, that's just not an option. So, we'll have to see what happens.

And then, of course, last night (Wednesday night), the kids decided to wake up during the night. They went back to sleep, nicely on their own. I did have to go back in there after they had fallen asleep and transfer Simon back into his own bed, however.

I'm just hoping that everyone is just jumping the gun and that the Board of Education will realize that this program is helping many of the kids (if not all) who are being referred to the program and therefore it should be allowed to continue. Optimism may not always be the best way to go without stepping forward to make the desired results happen, but I will step in once I feel I have something to offer. Right now, I really don't think there is anything I can do.

Monday, December 7, 2009

....how am I doing with everything now that more time has passed? I think things are starting to get a little bit better. It's been a week since the meeting, and every day I've been going over everything -- how they are going to do in different programs, and how I am going to handle everything. And I think I'm finally starting to come to terms with it all. I still feel like it's wrong to separate them and it still hurts, but I do realize the need to send them to programs that will address each of their needs, which means separate programs. I still feel that I'm being made to sacrifice what's best for them in order to give each of them the best opportunity for success, but when I think about it in those terms, it reminds me that this is the way it has to be. And how much this will affect the dynamic between them and their own personal relationship, well, we'll never fully know how much impact this will have because I refuse to think in the "What if...." world. This is what they will know and I can still hope we can get them back together again before too long.

Now we are getting ready to start the insanity of getting everyone ready for their new programs. Simon has his initial orientation at MPAC on Wednesday and we are still waiting to hear from CAPP to set up Rachel's orientation (not expecting to hear anything until next week at the earliest). Then there will probably be at least 2 visits for each school prior to January 12 (their first days) to get everything set up properly and prepare them for their first day (since transitions are notoriously bad for autistic kids [even more so than a typical developing child]).

Schools will be closed for over a week with the holidays at the end of the month and then we'll have one more week with MCITP prior to making the transition. I know we've only been working with them for about 8 months, but it's hard to believe that our time with Infants and Toddlers is this close to ending. There's still a lot to do before we get there.....

Saturday, December 5, 2009

I had gone out for a couple of hours this morning -- Rachel was having an ABA session and I needed to run to Kohl's (HAD to take advantage of the 3 day sale) and make a quick grocery store run. I was gone for about 1.5-2 hours -- not too bad, but a little longer than I had planned....

When I got home, I sat down on the couch and all 3 kids came over and piled on me a bit....was a nice feeling (although not the most comfortable). Simon snuggled right into my left side and nuzzled in as close as he could get.

Then I heard it -- I LOVE YOU!!!!! It was clear as a bell, and so poignant that I almost cried. Instead, I picked him up, found room for him on my lap and gave him a HUGE hug and kiss and told him that I love him too!!!!

He's said this to me once before, but that was over 3 months ago. That time, it was as he was settling down for a nap after a very hard morning and he had fallen asleep shortly after saying it. This time, I had been out for a little while (he got to spend some quality time with his dad and brother while I was gone). But he stayed snuggly for about 20 minutes before going back to full-swing playing with his toys and siblings.

After the last week, this made me feel so warm and cozy inside -- it doesn't solve any of my problems, but it's so nice to hear that my baby loves me!!!!! (I knew that before, but hearing it is always special.)

Thursday, December 3, 2009

Things have been really hard for me the last couple of days. I'd been preparing myself for quite some time (at least 6 weeks) that Rachel and Simon were going to be separated -- there was barely an extremely slim chance that they would rightfully be placed in the same program -- but now that it's happened, I can't seem to deal with it.

When we first visited MPAC, I remember leaving there thinking that MAYBE Rachel will do all right here, but Simon -- this is definitely the place for him. Then we saw CAPP (about 10 minutes later) and I had that same conviction that this was the program that was right for Rachel. At that moment I KNEW that they were going to be going to separate programs (even though all my preschool visits have included [and almost been about] my attempts to try to determine if the program would fit both of my kids together). For 6 weeks I've been telling myself that the committee would see things that way. But, since it hadn't officially happened yet, I kept that slim hope alive that they would see something that I or the team working with the twins hadn't seen. Apparently, I've been counting on that. Now that the expected has happened, I feel like the results of the meetings are wrong.

All right -- that's a bit of an overstatement. I do believe the decisions were right -- MPAC really is a great program for Simon; CAPP is a great program for Rachel and I truly believe they will both thrive in their respective programs. But (and please forgive me if this statement doesn't seem to make sense -- it makes perfect sense to me) right now it feels like I have to sacrifice what is best for THEM in order to address what's the best for each of them. The individual side is more important right now -- they have to learn how to cope with things in general in order to be able to cope with others, including each other. And the good part is that they do have each other to lean on.

But they are staples (and in my opinion necessary ones) for each other -- they help regulate each other to a certain degree. Simon cannot fall asleep at night without feeling his sister right next to him. Even when he wakes up during the night, he needs her closeness to help him settle back to sleep. And we're starting to see this during the day as well in their play. They tend to gravitate towards each other. I wouldn't fully say they "interact", but they do "feel" each other. What will happen to that when they're separated for 7+ hours every day? Will that bond continue to grow or will it be severed?I can't help it -- they're only going to be 3 years old. At this point, I truly believe that it's intended for twins to be together. I've always said that I may believe some absolutes, but I will look at each situation separately when it comes to my children and make up my mind as to what is truly the best decision, and this time I agree with the above absolute. To that end, I'll debate the pluses and minuses once they are truly school-aged (even though my personal philosophy says to keep them together at least through kindergarten) but they're not even 3 and I feel like I'm FORCING them apart. Every time I think about it, it seems to get worse rather than better.

Again, I KNOW that I need to focus on their individual needs rather than the "twinness" needs for right now. But why do I have to sacrifice one for the other?

Tuesday, December 1, 2009

Today (IEP Day) has been, well, a VERY long day. Well, I suppose things started last night. All I can say is I can't figure out how kids just seem to know what is the worst possible time to, well, damage themselves a bit.

Let's start with Simon last night. When we took them upstairs to begin the "nighttime routine", Daniel just started playing with him right away and knocked him head first into his bureau. Fortunately, other than a short stint of crying, there was no harm done. But then, when we were going into the final stretch of preparing for bed, he tripped over Kevin's leg, right into the bedpost. He didn't come out as cleanly that time. He immediately had a large bump growing out of his forehead, that required an immediate application of ice. Well, if anyone reading this has ever tried to put ice on a head injury in a 34 month old autistic child and was successful, PLEASE tell me how you did it!!!! We took short stints trying to get as much benefit from each icing period. Fortunately, by the time he woke up this morning, he still had a bump but it didn't dominate his face as we were afraid would happen last night.

Then, this morning, Kevin and Rachel were playing in the same ways that they have played regularly for I'm not even sure how long -- playing the "Swoop Swoop" game. Rachel was already crying when I brought her into the room after getting her dressed -- I stayed out of the room to get Daniel's clothes for the day and pick up the twins' room -- but something changed in her crying. When I came into the room and asked her why she was crying, the look on Kevin's face told me that something was SERIOUSLY wrong. He informed me that he felt her arm pop during the game and that she wasn't using her left arm quite right. We learned during the summer that Rachel has "nursemaid's elbow" when her shoulder popped out with minimal apparent cause. When I was trying to comfort her and I noticed that she was rubbing her left eye with her right hand, I realized we had a problem and I immediately brought her downstairs and put her in the car to take her to the ER (I know better than to take a chance of not popping her arm back properly). As we were approaching the ER, I noticed that she had stopped crying. I looked back and she was holding her sippy cup with both hands and was reaching (with her left hand) for (and successfully grabbing) a toy on the seat. So, if she had dislocated a joint in her left arm, it had popped back in on its own. When I saw her successfully grab that toy, we just came home and went about the day as planned.

And all of that prior to 8am!!!!!

The meeting though, started at 10. When we arrived, Rachel found her favorite book (Goodnight Moon) and was determined to keep it. So, when it was time for us all to come into the room for the meeting, the committee got to, let's say, see her "determination in action". She stayed in the room for about 10-15 minutes before she joined Simon in the classroom. We went through the whole actual IEP and determined eligibility, set goals and objectives and there was no question as to what her placement would be -- she is an ideal candidate for CAPP which is the autism program offered by Montgomery County, MD schools that is based on the ABA system. There was no surprise about this placement at all for me, Kevin, or probably anyone else. But at this point, I knew that the dream of keeping them together was pretty much completely dead (Simon wouldn't do well at CAPP -- if there was any hope of keeping them together, Rachel's placement would have had to be to MPAC).

After we were done with Rachel, we immediately jumped into Simon's meeting. I think I was really hoping for a break, especially to get my head on straight after realizing that the expected result for Rachel came true and keeping them together was a lost dream. But one of the committee members had to return to the central office so time was of the essence. We did the same procedure as we did for Rachel and, at the end, they suggested sending him to MPAC. Kevin was sitting next to me and I could hear the sigh of relief coming from him. This was, again, the result we were expecting. But the same time I could hear Kevin's sigh, I felt the floor fall out from under me. I already knew the dream was dead, but having it directly facing me in the eye, well, I'm not sure exactly what it's done.

I'm not saying I'm disappointed -- because I'm not. These are the best results and what we were hoping for in most ways. But I still can't get over the fact that they are going to be attending separate programs. I'll adjust to it, I'm sure. But it's going to take some time.

A Little Bit About Me and My Family

Every once in a while, something happens to a family that seems to change everything, whether that change is positive, negative, or in an uncertain direction. One such thing happened to us in March 2009, when we were informed our 26 month old twins (girl/boy) were BOTH on the autism spectrum. Their older brother (nearly 4 at the time) had always been ahead of the curve for most developmental milestones, so we had never really considered that some of the delays the twins were having had anything to do with autism. Well, we were wrong. Since then we have been learning about learning techniques and doing everything we can to make sure they get any and all help they need so that they can live normal lives. This blog chronicles that journey.

If you have all of those things: crust, sauce, cheese, you made an Autism pizza. It might have different toppings, but you can look at it and know it's still a pizza. If your pizza doesn't have sauce, that's Aspergers's. If your pizza is missing more than that but still kind of looks like a pizza, that's PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified)